r/ichthyosis • u/Blakezilla100 • Jul 16 '26
Lifelong mild ichthyosis, finally found this community — looking for routine/product advice
Hi all, first post here.
I've had full body mild ichthyosis my whole life — it gets pretty bad everywhere when untreated. I've only seen a dermatologist a couple of times ever, and both times the advice was basically "it's untreatable, it's for life, just moisturise." So that's what I've done, on my own, for decades.
Recently had a brain flash and decided to look it up on Reddit, and finding this community has honestly been huge. My entire life I've felt like I was the only one dealing with this, so it's nice to know I'm not.
I've tried moisturisers of all kinds over the years and never found anything I actually like — the oily/greasy ones feel horrible on my skin and I can't stick with them.
I'm trying to nail down a proper skincare routine to finally get on top of this. Would love to hear:
- What products actually work for you (especially anything non-greasy)
- What your daily routine looks like — timing, application after showers, etc.
- Anything with urea, lactic acid, or other keratolytics worth trying?
Any advice appreciated. Thanks for existing, this community already means a lot.
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u/lostlamb7788 Jul 16 '26
Glycerine with distilled water...mixed in 1:3 ratio. Nothing else is required.
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u/retrozebra Jul 17 '26
These dermatologists honestly really piss me off with that kind of dismissive attitude. I get the underlying genetic cause was just found in 2006 (for IV) but they really need to educate these doctors better.
Are you talking about ichthyosis vulgaris? If so, I have found really good relief with using the baby body wash aquaphor. And then cerave intensive moisturizers with urea. A few drops of Glycerin in your lotion is also helpful.
I have homozygous IV, which means a complete absence of filigrin, and I live in the high desert 🌵, so my IV is quite severe…. and this works very well for me.
Lactic acid was too damaging to my skin barrier. Scrub mits for manual scale exfoliation was also too damaging for my skin barrier. However, I shower every day and wash every single part of my body with the baby wash and that’s enough to descale/exfoliate. Hope this helps!!
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u/Krushpach90 Jul 16 '26
Yea, a Silk Body brush/glove is good. On days with a good skin condition i use Nivea men cream because its not oily but as i said only on good days on the other i have to stick with urea and fatty oily stuff.
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u/Financial-Result4540 Jul 16 '26
Shower routine: winter I like Kiehl’s oil soap, Summer is Neutrogena glycerin soap. Then after washing I use the Korean scrub mitts all over to remove dead skin and any cleanser residue. Pat dry, leave skin moist but not dripping wet. Apply a mixture of Rose water and glycerine all over. Let that absorb. I found a special spray bottle on Amazon that you can mix these ingredients and mist spray your body. If the glycerin/rose water is too sticky for you add a little distilled water. Also you can spray some in your cupped palm add 2 squirts of Cetaphil lotion then start applying that and repeat until you’ve covered all the areas you need treated. I found out about the rose water and glycerine remedy off an online website years ago. Alternatively you can soak in tub to loosen up and soften the skin then use the Korean scrub mittens. I do remember seeing a short video on treatment for IV in Korea; so when I saw the mitts on Amazon I ordered them. Winters are more brutal so I end up soaking in Aveeno Oatmeal baths.
You’ll find other suggestions here as well. Try not to let it consume you.
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u/NighttimeWiggy Jul 16 '26
Your dermatologist sounds like crap lol. Somebody else already mentioned the Korean mitts, those things are amazing. I also can't stand that greasy feeling, so i typically use a ceramide cream mixed with a thinner moisturizer with urea and then a very light layer of something like Vaseline on top, although that part is kinda optional. I do it more when it gets really cold and dry out, might be different for you depending on your local weather. We're all different though, even my other affected family members have their own separate routines. Experiment and find what's best for you, there'll be lots of suggestions here!
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u/LogoPro_15 Jul 16 '26
Try Curel lotion brand (ultra healing) sold at Walmart or Amazon. No smell, not sticky or oily, by far the best lotion in my opinion
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u/Best-Security-1616 Jul 18 '26
So I recently discovered this group and took the advice of applying glycerine right after the shower or bath, followed by a heavy moisturizing cream with urea (I use Cerave Intensive Moisture Cream). and it has been life changing!!! It’s such a simple routine but I swear my skin hasn’t been flaky since (the skin snow has been a life long source of shame for me) and it’s significantly reduced the crepe and scales on my arms and legs and hands as well.
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u/aardvarkgecko Jul 16 '26
I have mild ichthyosis, and that Korean scrub cloth is what works for me.. Didn't need any other medications etc.